Dear Congress, A National Registry For MS Information: Please!

We say that there are approximately 400,000 people living with a diagnosis of Multiple Sclerosis in the United States…but we don’t really know.

This session the US Congress is set to, once again, take up the idea of a national registry for neurological diseases (like MS, Parkinson’s disease, Alzheimer’s, etc). The idea was proposed in the 111th congress and even though the house version had 206 members sign on as co-sponsors, it died in committee.

The new House and Senate versions of the bills have fewer than 50 sponsors between the two houses.

The goal of the registry would be to serve as an important source of epidemiological information for researchers, health care providers, patients and service organizations. As of now we have very little data as to incidence and prevalence of MS (nor the other listed conditions) as well as providing an important foundation of information to help us understand many factors of MS.

MS is not currently a ‘reportable’ disease to the Centers for Disease Control and Prevention (CDC). This means that information to help us understand factors like geographic clusters of MS, variance in gender ratios, disease burden and health care practices are not available at any level beyond antidotal.
According to the Pew Environmental Health Commission’s 2000 recommendations, such a registry could allow for identification of high risk populations, recognize related environmental factors and even begin to establish prevention strategies (when coupled with hoped-for research breakthroughs).

Service organizations could also rely on the information to help them provide targeted services to people with MS.

The last one-off study of incidence and prevalence of MS in the United States took place in 1975. It’s time for a permanent, National registry of these devastating neurological conditions and as much information can already be mined from the Medicare, VA and State health departments, initial cost to tax payers would be minimal.

Please, join with me in contacting your representatives in congress and ask them to co-sponsor and/or support H.R. 2595 or S. 425. I am joining a group of 6 or 7 people living with MS in my community at a meeting with our Congressman’s staff next week. I encourage you to call, write or visit your representative’s local office and ask for their help.

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ABOUT THE AUTHOR

Trevis Gleason

Trevis L. Gleason is an award-winning blogger, food journalist, and published author. His most recent book, Chef Interrupted, tells the story of his diagnosis with secondary-progressive multiple sclerosis, in...read more

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